K Pressin: new treatment for ME CFS(?) - video Dr Derek Enlander (25 June 2019)

Mij said:
We are most likely to feel better if we take supplements that we are deficient in. You won't know which supplement is helping if you take a whole gob of them.

I recall JB took magnesium shots and felt they helped her. I took shots for years (off and on) and it made a huge improvement in my overall energy, and I no longer felt out of breath from walking one block.
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However, how can one know this is not a placebo response? This question is not necessarily aimed at you @Mij but at all the claims of improvements following one treatment?
 
@Milo in my case my Mg RBC test showed a severe deficiency. The rocking motion in my head stopped, my gait was smoother, I was no longer out of breath and I felt closer to normal again. I didn't feel much difference with the MG shots alone, but when we added the taurine the relief was almost immediate. I probably took more shots than I needed, but I wanted to make sure my levels were way up.
 
Mij said:
@Milo in my case my Mg RBC test showed a severe deficiency. The rocking motion in my head stopped, my gait was smoother, I was no longer out of breath and I felt closer to normal again. I didn't feel much difference with the MG shots alone, but when we added the taurine the relief was almost immediate. I probably took more shots than I needed, but I wanted to make sure my levels were way up.
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Sure i accept that. I think my question is more general- whether we can move past placebo response in clinical trials. In your case you have a hypomagnesemia. You supplement with magnesium and you feel better. What to do with treatments for ME. In the last clinical trial for ME, with Rituximab, half of the subjects had the placebo but believed they had a response when in fact they did received water.

Edit to add, in order not to veer off-topic, how can patients ‘believe’ about effectiveness of a treatment, like K-pressin if only one doctor prescribes it and uses it and does not publish? What can go wrong? Patient may believe there are little improvement and the doctor interprets this as major improvement. Or patient may not feel better but appears better when he shows up at the doctors office and gets tagged as improved.
 
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Jonathan Edwards said:
I think this is straight pseudoscience leading to quackery. I agree that it is bizarre that anyone, or any regulatory body, should consider it acceptable for physicians to put out videos like this.
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As some people here know, I´m a pwME and a medical oncologist.
After getting sick in the winter of 2015, I started to dig in the world of a unknown illness. One of the things the rang my alarms was the "X Doctor´s protocol" phenomenon.
So I totally agree with Jonathan Edwards assesment of this embarassing situation.
 
Trish said:
But there's always that niggling feeling that I might be missing out on some magic combination of nutrients that might help me. I wish these doctors would do the research.
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@Trish, yes! Thousands of hours reading and thousands spent at Iherb...

That reminds me to do a follow up interview with Australian psychiatrists who were studying mitochondrial supplements.
 
Kutapressin was being discussed in 1994:
https://www.prohealth.com/library/current-drug-treatment-trends-in-chronic-fatigue-syndrome-11381
A medication originally used in dermatological conditions holds promise for certain CFS patients. Kutapressin is an extract of liver, and current physicians, including Dr. Charles Lapp, feel that it “has a place in the treatment of CFS…particularly if there is evidence of viral activation.” In the test tube, kutapressin can suppress herpetic viruses, and even the so-called “spuma” virus in CFS.

The speculation is that it not only works as an anti-viral drug, but also as an immune modulator affecting the cytokines. Most patients require 60 to 80 doses of the drug before any improvement may be noted, according to a study by Dr.’s Thomas Steinbach and William Hermann. These physicians, says Dr. Lapp, “…have done a great service to bring this drug to our attention.” Kutapressin, according to Dr. Lapp, “is the only available medication that has such a success rate in the treatment of CFS.”
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The two articles in 1994 were:

Kutapressin Inhibits in vitro Infection of Human Herpesvirus Type 6
D. V. Ablashi, Z. Berneman, C. Lawyer and A. Komaroff
Clinical Infectious Diseases
Vol. 18, Supplement 1. Chronic Fatigue Syndrome: Current Concepts (Jan., 1994)
https://www.jstor.org/stable/4457615

Subjective Reduction in Symptoms of Chronic Fatigue Syndrome following Long-Term Treatment with a Porcine Liver Extract: A Phase 1 Trial
Thomas Steinbach, William Hermann, Carl Lawyer, David Montefiore, Sudhakar Wagle, Ali Gawish and David Ferguson
Clinical Infectious Diseases
Vol. 18, Supplement 1. Chronic Fatigue Syndrome: Current Concepts (Jan., 1994)
https://www.jstor.org/stable/4457617

In 2002 ProHealth summarized the results of the first study listed above (Kutapressin Inhibits in vitro Infection of Human Herpesvirus Type 6)
https://www.prohealth.com/library/kutapressin-for-chronic-fatigue-syndrome-20168
Kutapressin (KU: Schwarz Pharma, Milwaukee, WI) is a prescription drug consisting of processed extract from porcine livers that contains peptides; it has been used in the treatment of patients with herpes zoster, keloids, seborrhea, other skin diseases and neurasthenia.

More recently, results of uncontrolled studies have indicated that treatment with KU results in abatement of symptoms of many patients with chronic fatigue syndrome (CFS). One large study found evidence of reactivation of human herpesvirus type 6 (HHV-6) in many patients with CFS. Moreover, HHV-6 DNA was detected by southern blot analysis in lymphocytes from patients with CFS. Because treatments with KU may have positive clinical effects on patients with CFS and the evidence that CFS is associated with reactivation of HHV-6, we investigated the possibility that KU might have direct activity against HHV-6.

[...] (Technical data)

These data show that KU is a potent inhibitor of HHV-6 infection. Although the mechanism of HHV-6 inhibition by KU is under investigation, electron microscopic examination of cells treated with KU prior to HHV-6 infection revealed abundant extracellular virus particles, which suggests inhibition of viral attachment and penetration.
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More links:
https://livingwithchronicfatiguesyndrome.wordpress.com/2010/10/25/nexavir-kutapressin-for-cfs/
Lots of detailed info on the history of using kutapressin

Summary of the long article above:
https://www.esme-eu.com/antivirals/nexavir-kutapressin-for-me-cfs-article447-135.html

https://drlapp.com/resources/relapses-and-flares/
...take medications faithfully, and consider the use of high dose B12 or a short course of Kutapressin to “get over the hump”.
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jpcv said:
As some people here know, I´m a pwME and a medical oncologist.
After getting sick in the winter of 2015, I started to dig in the world of a unknown illness. One of the things the rang my alarms was the "X Doctor´s protocol" phenomenon.
So I totally agree with Jonathan Edwards assesment of this embarassing situation.
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Thank you @jpcv this is an important message. There are other protocols out there where physicians use their own formulation, some have even taken people in Costa Rica for ‘stem cell treatments’ (20,000$ a pop, plus travel expenses). This practice does not happen in mainstream oncology, where treatment protocols are determined by science and clinical trials.

The harm being done is that there is no record of effectiveness from clinical trials, no scientific publication, no scientific advance from these doctors’ experience, and a lot of money spent by patients made to believe they could be cured by these treatments.
 
more info on this;
Kutapressin now called Nexavir (it's an antiviral):
Nexavir (Kutapressin) for ME/CFS
With thanks to a blog of cfssufferer. http://livingwithchronicfatiguesyndrome.wordpress.com/. Nexavir may improve ME/CFS symptoms because it: 1. Inhibits EBV, 2. Inhibit HHV-6, 3. Is anti-inflammatory, 4. Is antiviral, 5. Is an immunomodulator (Nexavir may help shift the immune system away from Th2 dominance.), 6. Enhances blood flow in the brain (as measured by a SPECT scan.). This increased rate of blood flow may be a consequence of the Bradykinin effect which involves dilation of the blood vessels.
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Used as treatment by Dr De Meirleir, Dr Cheney,Dr Lapp, Dr Teitelbaum and Dr Enlander
http://www.esme-eu.com/antivirals/nexavir-kutapressin-for-me-cfs-article447-135.html

see also
In 2004, Nexco Pharma acquired the rights to Kutapressin from Kramers Urban (Schwartz Pharma). Nexavir is the exactly same formulation as Kutapressin. The drug is approved by the Food and Drug Administration on a “grandfathered” basis, given that its development predates the establishment of the FDA testing protocols and its long safety record.
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We still have minimal knowledge of the active ingredient and its working mechanism. Nexco Pharma would like to do research to breakdown Nexavir so it could be produced without using porcine liver, hence making it a non-biological drug.
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http://nexco-pharma.com/history.php
 
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Now I'm completely confused. So according to this blog it's not just a nutritional supplement, as I had supposed from the use of the term 'liver extract' in the list of ingredients for hepapressin. Whatever is extracted from the liver has drug effects on viruses, so they claim.

Has anyone found a clinical trial published on this stuff? Preferably a double blind controlled trial?

It seems it's popular with some US ME doctors, but none of them has done a proper clinical trial. And when they talk about patients improving - the blog quoted is very vague about how much improvement is experienced. Is it yet another placebo?
 
Sly Saint said:
Dr Enlander is considered an 'ME expert' in the US (he was Jen Breas doctor and is in Unrest). He has previously said on a number of occasions that he and his team (when he was at Mt Sinai, he now has a private clinic) 'proved' that exercise was bad for pwME but they never published anything on it. So there will be a lot of people who will follow his advice; one of the reasons I was a bit shocked to find this video.
I think he still has connections at Mt Sinai (Terri Wilder of #MEAction works there).

see also:
https://www.s4me.info/threads/mount-sinai-medical-center-ny-and-dr-derek-enlander.2274/
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I am STILL at Mount Sinai Medical Center, K pressin is in a clinical trial at present.
Deny PACE and NICE which makes ME CFS a psychiatric problem, it is a physical problem possibly based in the immune system. We believe that the methylation cycle may be deficient. This is what we are working on
 
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Michiel Tack said:
De Meirleir used to prescribe Nexavir. There was a court trial about it because he imported it to Belgium without permission. De Meirleir argued that it was just a nutritional supplement, but the court eventually ruled that it was a drug.
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Nexavir was a continuation of Kutapressin, many in control of Medicine in Belgium thought that ME CFS was a psychiatric condition, and Dr De Meirleir did not accept their thinking. Nexavir therefore was not acceptable to them. He was mistreated in my opinion.
 
Hello @dr enlander, welcome to the forum. I am pleased that you have joined us as it will, I hope, enable us to learn more about the clinical trial you are running for K pressin.

I have just re-watched your video linked at the start of this thread. I hope you will understand that, for someone like me who has been sick for 30 years, seeing what comes across as a advertisement for a bottle of unnamed ingredients does not seem like a good way to make me feel confident I would want to buy it.

We are faced every day with protocols, remedies, 'cures' and treatments. The on-line world is full of people trying to sell us stuff. At the moment we have no way of distinguishing Kpressin from the rest.

I have a few questions I would be grateful if you could answer.

1. On this forum our interest is in science, and evidence based medicine. I am pleased to hear you are doing a clinical trial. It would be a great help to us if you would let us know what stage it is at. All you say on the video is that you are 'taking note from patients using it to give a report later in the year'.

Can you be more specific? Is it a pilot study, or a full trial? Is it double blinded, is there a control group, and what are your primary and secondary outcome measures? Is there a registered protocol we can read?

2. I note also that you say on the video that you believe ME/CFS is a 'problem of an abnormal methylation cycle in the immune system'. I would be interested to learn more about the basis for this. Can you point us to the research papers supporting it?

3. And finally, you describe Kpressin as an oral version of kutapressin and hepapressin. Can you give us a link to the research done showing effectiveness of either of these?

Thank you.
 
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dr enlander said:
I am STILL at Mount Sinai Medical Center
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My apologies if I have got this wrong. As I understand it, from the Mt Sinai website, you work there as a clinical instructor at The Icahn School of Medicine at Mount Sinai.

I was referring to your work as a doctor.

As far as I can find out, your clinic is here:

Dr. Derek Enlander
860 5th Ave
New York, NY 10065

and although you are affiliated to Mt Sinai Hospital, your practice operates as a separate, private clinic that doesn't accept insurance.
Other than your Facebook page, I cannot find any reference to a ME or CFS clinic at Mt Sinai Hospital.

(not intended as a criticism, just seeking clarification).

eta: also re the clinical trial, I cannot find it on Mt Sinais Clinical trials search
https://www.mountsinai.org/clinical-trials/search
 
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I did kutapressin shots shipped up from the USA to Canada in 1994 for 6 months and I improved greatly not enough to go back to work but I had hope - unfortunately I never continued - though I had plans to - every doctor after the GP (aids doc) who shipped it up for me - either had no interest in M.E. or my lack of quality of life or changed my ME DX from 2 infectious diseases specialists into a somatic disorder curiosity of psychiatry. I search for info on Dr Enlanders K PRESSION as I saw his video today which brought me here. I know he used Nexavir hepapressin which wasn't as good an outcome (not a strong) as kutapressin, however, I would have taken it and compared to the Kutapressin but i have been housebound without a GP since 2004.

I have taken porcine frozen Natcell products but had little improvement. I can't find the K PRESSION ingredients list or patients results from search - they should be easily findable
thx
 
Totally my own experience, but I took Kutapressin back in the early ‘90s also. Most of my support group friends were Dr Cheney’s patients and they seemed, anecdotally, to be having good results.

I am a fairly skeptical person, but two doctors in TX had published a paper on it which I read carefully and decided to give it a try. My husband learned how to give me the injections - a little too enthusiastically, in my opinion!

After just a few shots, my health, which was bad already, nosedived. I was desperately and called one of the TX doctors. Every time I quoted his own paper too him, he’d say “Did we say that?”

Finally he informed me that, if the medication was not working, I must have some other disease. Since he was in TX and I couldn’t get out of bed, I couldn’t hit him with my cane, but I sure wanted to.

I, of course, discontinued using the medication, but my support group friends had serious doubts that I would recover to my previous terrible condition, but after a number of months, I did. Not a fun experience.
 
I have been using the oral K-Pressin for about a year now. I feel I am doing a little better than I was using the hepapressin. I alternate days with K-Pressin and Beta-Max B12 spray.
 
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